A New Way. Can You Help Some People Who Mean Alot To The World, and To Me?

Throughout our lives, we will come to find ourselves in a lot of different places.

A lot of different rooms.
A lot of different corners.
A lot of different wheres.

Those wheres will be unexpected. They will surprise us, scare us, change everything, change nothing, and break our hearts.

I’ve found myself in some pretty amazing wheres, and some pretty devastating places. But one of the constants was having the opportunity to be part of Postmasters Gallery, and to continue to feel like I am part of their huge art family.

And that’s why I am asking you to be a Patron and help support them to keep making the artworld more radical, more daring and the world a better place to be – for us all. 

Furthermore, outside of art, The Postmasters Family helped save my life… and helped me get back onto the path of trying to live my life.  See Postmasters aren’t just a normal gallery. They’re everything and more. They’re community, they’re bravery, they’re hope, they’re protest, they’re US.

Let me tell you how, and just how their Patron rewards will LITERALLY MAKE A DIFFERENCE to YOU if you invest.

In 2008, I got to chance of a lifetime. I had decided the previous summer (2007), whilst working with steadfast ambitious & economically supported college-aged Americans, that I needed to catch up with my life and career ambitions. And my career ambitions was to be an artist and to live and work in NYC. Preferably in a gallery. This was no small-feat for an under confident, working class kid from Doncaster, UK (DONX!).

I worked at a bookies and at a toy-shop part-time during term-time,  whilst praying to the art gods that I’d get my artworld NYC summer. I did anything to make sure I could afford to go.

I remember exactly where I was when Magda of Postmasters Gallery said she’d meet me in person with the chance of getting to be Postmasters’ intern the summer of 2008. I was sat with my friend James Cotton in the Graphic Design-Apple suite at the old art campus. It was a super sunny day for the winter and the sun was blinding through the large windows. I just-re-read that same email, over & over again. I still have it archived even though I no longer have that email address (at hotmail.com?!).

I remember being incredibly nervous. I think I was practically mute for the first 2 weeks of being at Postmasters. But I learned so much.

I learnt around 26 years of Postmasters Show history, and art history in the making, as I was set to digitalizing their whole archive. Endless slides to be scanned, and amazing write-ups of artists in ArtForum, NYT, Art In America, et al – of still practicing, artists who have since disappeared, but a theme emerged.

These shows were often groundbreaking, urgent, courageous, some genuinely funny, ahead of the curves. New Media Art shows before new media art was accepted as it is today (though we still have ways to go with this medium). Women artists equally represented, and mostly – it still felt contemporary, and alive and represented the values that Magda and Tamas have sought to bring to the artworld their whole life.

I also learnt how to send invoices via fax (though still not into faxing), I met some of the coolest artists who continue to inspire my practice today, about art museums collections & how they buy art for them, at one point – I was left manning the whole establishment for a week?! and I learnt loads from Magda and Paulina’s experiences and ideas.

I was properly schooled that summer I was at Postmasters. I remember leaving after my last shift and I walked down to 9th Ave, and had to search for a working pay-phone to call my mom because I felt so sad I was leaving this amazing thing I had sort of been apart of for a short time.  I left that summer with my heart heavy but inspired.

I got back to the U.K. and art school felt kind of boring after that experience. I had to do something. Magda taught me that literally, anything is possible, even starting from scratch, along as you have perseverance, some people and community who can support you.

So my friends and I started our own lil’ artspace called CAKE (rebranded CAKE Everyone). We were a small space above a bar on West Street, Sheffield, UK. We lasted around 2 years and we learnt loads and had so much fun. But the thing is, I took everything I had learnt from Magda & Postmasters, and I put it into action in Sheffield – and invested it back into our local community.

I am still employing these lessons from this time into my life and practice.

Now, it would be easy to say – I became, like, an awesome artist, or got lots of gallery jobs… but because i’m not very smart or that talented, that didn’t really happen (and that’s ok!). But the year after I graduated was HARD. I nearly lost my own belief. But Magda offered hope and advise on the end of emails. That really helped me push through what I thought was a dark time…

Then things started to work out… I got a residency at SITE Gallery, I was working freelance as an illustrator, doing some university lecturing… I came over to work a summer in Boston/New Hampshire in the U.S.A.  but I had been feeling poorly for a good few months before I went… tired beyond belief, coughing up blood, endless nosebleeds, bone-pain, flu-like symptoms, drenching nightsweats.

And on the 21st August, everything changed. I found myself sitting in front an oncologist at General Mass Hospital. With my YMCA boss, 3,000 miles away from home. The doctor cleared his throat a few times and told me it looked like Lymphoma… Cancer. He told me, if it was time-sensitive and I didn’t get it sorted then I would die.

Well. As you can imagine, that wasn’t the news that I was expecting. I didn’t tell my mom for weeks (I was only 24). I felt ashamed, I don’t even know why. I thought it couldn’t be true. I googled the odds every-single-day. My boss kept telling me I needed to go home. The only person who I decided to tell who I didn’t work with — was Magda.

Because Magda was a person I knew I could trust, and always has a no bullshit take on everything but has an aabundance of empathy too.

After a crazy 32 U.S.A. state roadtrip (yolo!) Magda & Tamas put me up at their place, Magda cooked me an amazing breakfast before I left the USA for unknowns at home, not knowing whether I’d make it back again.

But the story is more complicated.

Magda nearly saw me go under. A few times.

I just had no energy. I laid in bed. Feeling sorry for myself. I was in pain. I was really sick. I couldn’t even watch Netflix. But Magda & Paulina would send reassuring tweets and emails and I slowly kept it together.

I worked harder at building my art-practice than on anything in my life, though it never felt like work. I devoted myself to it, though it never felt like sacrifice.  I am also endlessly grateful. Those years gifted me experiences, skills, lessons, and friendships. I would not be me without them.

Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it your life.

I had struggled to get back, but my heart wasn’t in it in the same way.  I simply craved a new challenge. It didn’t matter why — I couldn’t lead  my life in the same way, and I had promised myself that I wouldn’t be caught without a plan if something happened to me again.

I realized I couldn’t have my old life back, but I also didn’t want it anymore.

So I decided to go into healthcare… radiotherapy & oncology! Of all things. But I’d kept all this secret from most people. It was furtive, shadowy work, and the secrets made my stomach ache.

 

But I reached out to M, and I hoped that she would still think I was an okay person.

The wild thing is, Magda still helped me through emails – giving me incredible advise and inspiration for my healthcare practice. To the point that I realized that I was still a fucking artist. I had got lost, but she never stopped helping me find the tracks back. I’m now doing my PhD combining all of my double agent status’ together. Just insane.

But here’s the thing about the Postmasters Fam., is that they don’t let you down.

Magda once said to me that we get dealt the cards that we get dealt, but we play them like they’re fucking Aces.  She has taught me that experience is subjective. We get to decide what’s devastating, what’s beautiful, and what we do next. In the books of our lives, we are both protagonist and narrator. And narrators have incredible power.

In writing this, I thought a lot about the places that shape us, and how, in turn, we shape those places in our minds. Postmasters have really shaped my life, in so many ways.

As human beings living on earth right now, we find ourselves in a very particular where.  The art-world mostly sucks, because it works for the 1%, lets not even talk about politics.

But this is something we can all help, maintain, and be a part of. Help sustain the legacy, help to make the future, help to secure a better history. Look down at your feet and decide what that means.

Instead of being afraid, I’m going to try to be brave. Instead of feeling regret, I’m going to focus on getting better tomorrow, and instead of hoping that someone else will say it or move it or mean it, I’m going to do it myself.

Postmasters has been there for us (in ways you might not even know yet!) so lets me THERE FOR THEM!

And as I’ve just shown you, the $100 or $500 a month reward will LITERALLY CHANGE YOUR LIFE. I can’t stress enough how much its worth it.

Let’s make art, and friends, and purpose, and be good to each other. And please spread the word!

If you got this far – Thanks!

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The Year of Zinc

I’ve not blogged in ages. I keep reflecting, but it’s stored in hidden word documents on my laptop – sometimes making an appearance at a conference, or on my Facebook – in the safety of friends and not just the internet-public.

But I’ve been thinking about getting to 30. Alive. I really can’t believe it.

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On the periodic table 30  is the element Zinc. Roughly one third of all metallic zinc produced today is used in a process known as galvanization. During galvanization, an object that is subject to corrosion, such as an iron nail, is given a protective coating of zinc. I like the idea that my new decade is started with the year of Zinc: an element that is most useful in trying to stop corrosion.

5 years ago, an event happened that changed my life. Some of you where there, and others have followed the progress reports. But, honestly, i think it’ll take a full ten years for me to understand the impact and outcome of that one event.

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Life in many ways is like a paint by numbers book, where you can colour, one tiny bit at a time but within invisible lines. The whole picture emerges much later. Perhaps Steve Jobs said it best:

“You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever.”

A decade ago, today, if you had asked me today if my life would turn out the way it has done — I wouldn’t have been able to answer that question. In many ways, life has been so much better than I ever really thought it would be!
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Getting to 30 isn’t really big news, but it’s a biggie for me, and ANY of my friends will vouch for me – I never thought I would make it to here. I thought this at high-school. I guess living in abject poverty makes you feel like this – like there’s no future. And this was even before I fell sick. But then when I did fall sick, I would look at what was happening to me and how i felt and thought for sure I wouldn’t be alive by now. At times, I actually didn’t want to live. Like, I just felt like I couldn’t live with this kind of pain – for the rest of my life – without someone understanding what this experience was doing to me with me.

So, I’m really grateful to be getting here.

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Despite this being kinda big news for me, i’m surprisingly anxious about it all too. I still feel 21 in my head. I still get I.D’d for booze at bars & M&S when buying BucksFizz, and if I’m really trying it on, I can still get Teen cinema tickets at the local Odeon.
My life is that of an 18 year olds. I moved back home, have no kids, no pension, basically a few $ in savings, the worst credit history – ever. I’m still a student, albeit I prefer researcher now (PhD). But getting really sick in my 20’s kind of funked things up a bit. I lost time for making and meeting people and things. I lost confidence, and money and I spent a whole lot of it when I got it — YOLOing or trying to find cures for my fatigue (all didn’t work BTW).
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By societies standards, I’m not a success. And I can feel it. I should have *done more* by now. People my age are consultants and own houses, and head-teachers and more. And it’s hard not to compare yourself. But in my own standards (and I think this is what matters) I’m relatively happy with where I am right now.
I mean, I am alive. I do think about that a lot.
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Confronting mortality makes you ask some fundamental questions of yourself and your relationships. It makes you a lot more honest with yourself. It forces you to say no more often, for you know the fleeting nature of life, the minuscule time we have on the planet and what matters is how we choose to spend it. And how you choose to act aswell.
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But 30 years is a long time to have witnessed change and fragility.  Over the past 5 years of ‘illness’, I realised that BEING alive and FEELING alive are 2 different things. And what I’ve learnt over 30 years is what Oprah’s words from her Golden Globes speech encapsulated:

“What I know for sure is that speaking your truth is the most powerful tool you have.”

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I recently read Dr Rod Kersh’s response to Henry Marsh’s guardian article  on the treatment by the legal system and the media, of a transplant surgeon scaring in his initials into patients livers.

And it got me thinking about empathy, and dignity, and teams and Zinc. Rod is one of the most compassionate (& innovative) doctors I know.  I first met him like 5 years ago. It was my 3rd time ever at a hospital appointment. I still hadn’t learnt how to “behave” in these situations (i think i still struggle with what to say and what not to mention even now).  But I still remember our first clinic with clarity, exact words and phrases. He told me how he was going to treat/talk to me (like an equal).  And it properly threw me. I thought about it for weeks afterwards. It was a weird thing to say. But it properly made me feel like I could trust him, that I (my life) was important. This phrase was further backed up by his actions, because in trying to describe what was happening to me, i described it more in how these symptoms was really hindering my life. And he was super intrigued by this. He’s the only doctor (except the ENT doctor this week who was genuinely concerned with my massive hearing loss and my quality of life/future) who seemed to gauge what was important to me. I noticed that when people didn’t hear me out, it made me feel more desperate. (That’s not to say everyone else I see or have seen don’t care… because that’s simply not true at all, but there’s a difference in acknowledging).

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He, and a few of my HCP, inspired me to be the best healthcare professional I could be. I subconsciously learnt what was good care and what wasn’t as good as that. And now everytime I am with a patient, I remember what is important to me when I am in this system. And the differences in actions and languages. And I want to make sure people feel seen and heard. Feel like whatever they’re telling me that is bothering them in their lives, that it matters. That they matter. Despite whatever is happening. Because often people just want to be heard.

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Many forget that it’s a rare privilege to find something you care about so deeply and be able to make it part of your life. For me, I realize that it makes sense that 30 is Zinc.  I am so endlessly grateful. These years have gifted me experiences, skills, lessons, and friendships. I would not be me without them because these people: my friends, teams, colleagues, working together – have acted like Zinc. 

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They have provided me with a coating, that has helped to ease the corrosion of life (from art, to work, to learning, to sickness and more). And in doing so have taught me how to be Zinc too.

You will never regret offering dignity to others.

We rarely get into trouble because we overdo our sense of justice and fairness. Not just us, but where we work, the others we influence. Organizations and governments are nothing but people, and every day we get a chance to become better versions of ourselves.

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And yet… in the moments when we think no one is looking, when the stakes are high, we can forget. It’s worth remembering that justice and dignity aren’t only offered on behalf of others.

Offering people the chance to be treated the way we’d like to be treated benefits us too. It goes around.

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The false scarcity is this: we believe that shutting out others, keeping them out of our orbit, our country, our competitive space—that this somehow makes things more easier for us.

But today, value isn’t created by filling a slot, it’s created by connection. By the combinations created by people. By the magic that comes from diversity of opinion, background and motivation. Connection leads to ideas, to solutions, to breakthroughs.

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The false scarcity stated as, “I don’t have enough, you can’t have any,” is more truthfully, “together, we can create something better.”

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And going forwards in setting the tone to my next decade is just that. To be Zinc: to help, share, collaborate and support. To be compassionate and empathetic.  I will do whatever it takes.

I just like to take this moment to say thank you to everyone in my life who have gotten me here too (from everything). I love y’all! Keep being awesome!

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gifts and choices

In my procrastination of trying to write up my methods section for RF2 (my next PhD barrier) I came across Jeff Bezos’s commencement speech from 2010. (Not super sure how I reached  it in my click-a-thon).

But I found it to be incredibly important.

After my life got shook up when I fell sick, I had to change how I worked, how I lived to move around shitty symptoms that really brought me down. It made me question everything I was, and who I am, and where I was going.  It hit me when I was on my way up in the intermediate art-world, and brought me tumbling back down to the ground, really hard – really unprepared for this new world – injured in so many different ways. Every time I looked at myself and my life, it was like looking at a mirror that had been cracked a bunch of times. I’m still not over it all.

At times, I feel more broken than I ever was, but I feel at different times and in different areas I have gained so much more. One area is in personal growth. Whilst I’m still trying and learning to be a better person (and sometimes failing,) I realized that I WANTED to REALLY be a better person. I had no idea how I was being supported years before I fell sick, and even still to this day, where I felt incredibly stupid for taking it all for granted.

Some days I literally feel like I’m dying, and with this came a fear of what would be my “legacy” (this is such a loaded and over-the-top word). But what do I want to leave behind? What do I want my work to be? We spend so much of our time at work, doing work – of all kinds – that it makes sense that we should try and enjoy and make the world a better place than what we found it in.  This doesn’t have to be a grandios project – we know it often only has to be the smallest thing that can make the greatest of differences. Listening.  Offering to help someone out.  Introducing yourself.  Donating to charity. To giving someone a helping hand up. The list is endless.

Bezos’s speech really resonated with me, and I think some of his words are good markers. Especially when the road is rough, and rocky, and risky and dark.  So I hope these bits I’ve chopped up here – help you.

In 1986, Jeff Bezos graduated from Princeton with a degree in computer science. In 1994, he founded Amazon.com. He was literally selling books from his garage. In 2010, he went back to Princeton to address the graduating class about the difference between gifts and choices — a profound reflection on reconciling being smart with being kind, an illusory choice many “successful” people feel like they have to make.

Cleverness is a gift, kindness is a choice. Gifts are easy — they’re given after all. Choices can be hard. You can seduce yourself with your gifts if you’re not careful, and if you do, it’ll probably be to the detriment of your choices.

Tomorrow, in a very real sense, your life — the life you author from scratch on your own — begins.

How will you use your gifts? What choices will you make?

Will inertia be your guide, or will you follow your passions?

Will you follow dogma, or will you be original?

Will you choose a life of ease, or a life of service and adventure?

Will you wilt under criticism, or will you follow your convictions?

Will you bluff it out when you’re wrong, or will you apologize?

Will you guard your heart against rejection, or will you act when you fall in love?

Will you play it safe, or will you be a little bit swashbuckling?

When it’s tough, will you give up, or will you be relentless?

Will you be a cynic, or will you be a builder?

Will you be clever at the expense of others, or will you be kind?

we are the difference in the world

Tomorrow, I leave to go to Krakow, Poland with my bro & his girlfriend. It will be my 2nd time there. I can’t wait to eat more proper Polish food!

But I won’t be here in the UK for the last bit of the General Election campaign. I’ve spent a good few weeks knocking on doors, writing much too long facebook posts trying to debunk Tory lies and records for people, endless retweets, lots of leaflet posting. So, I’m both REALLY REALLY nervous for 8th June, but i’m also welcoming this social media break – where things can become a bit more distant.

So I write this post here, to ask you to consider helping Labour, or voting them in 8th June.

Last Monday, I was invited to the Houses of Lords reception to give a small speech. I was invited by Lord Professor Robert Winston, for Sheffield Hallam University – to talk about the “Hallam Difference” and what I think this is, and what it has meant for me.  (File this under UNBELIEVABLE SMIZZ MOMENTS)

I talked about my challenging upbringing  in poverty, that ended up including fleeing from domestic violence and homelessness. It included the low self-esteem I had ( & still have to be honest), the crushing imposter syndrome, the failing school *at the time* I came from to get to university, how I was the very first person in my family (& still am) to finish school and then go onto university and then later on after everything started going well, falling poorly and everything getting messed up again.

But within this was support networks that stopped me from falling into real despair, or getting lost in the cracks in the system. Hallam has outreach teams who worked with me to get to a university, a Labour government at the time had funded 1oo’s of policies and projects that stopped my life from being increasingly worse – such as Aim Higher, EMA, Sure Start Centres — all helped me stay on at school. Policies that helped my mom financially, a few more council houses that we don’t have at the moment (though it was bad then too). Maintenance grants so I didn’t end up in MASSive amounts of debt from university.

And once I got to university – the people made it everything. Hallam gave me the environment and the belief to build my confidence, to make friends for life; it made me feel seen / heard for the first time in my life. I felt like… I kind of… fitted in…. I was able to see a future for myself for the very first time in my life. Rather than just living day to day.

I was able to fulfil my whole life’s dream of being an artist and working in NYC in an amazing gallery, no less, with truly amazing people who became my mentors & inspire me to be better – and work with families of all kinds in Boston, doing art stuff – and when I fell sick, they paid for all of my medical bills when I was over there. Literally, they all came together to help to save my life.

When I came home, and I was angry at myself for becoming sick… for becoming broken… and not knowing how I could stop it, I just couldn’t figure out how to fix myself… my life had to be changed to adapt what was & contines to happen to me – and I was NOT happy about it. This jarring experience was eased when I met incredible NHS staff who helped me feel heard and understood in a way that really touched me. I can’t put into words how compassion makes you feel when you’re at your most vulnerable.  And I realized I wanted to take all of these experiences, use my own skills, and give back that time and kindness to the NHS and its future.

And Hallam was there for me again.

I got to tell a whole room of important people  at the Houses of Lords – people who can make a difference – how hard it is to get to university from precarious backgrounds. And just how my life has been transformed by these experiences.

I wasn’t sure how it was going to be recieved, but afterwards loads of  people came over to meet me,  and would share their stories of humble beginnings too. Which showed me there’s power in vulnerability sometimes.

But Why do I tell you all this? And what’s it got to do with voting and how we cast the vote?

Well, I’ve learnt that too often the world celebrates good heart without acknowledging the pain and hurt that shaped a person and their direction. Life may throw a thousand harsh storms your way but sometimes (not always) we can use them to grow and be better and be more good from it all.

You will be lost and unlost. Believe in your craft. Believe in your heart. Believe in your ability to become whatever it is you want to be and to overcome these challenges that lay ahead for us.

But we need OPPORTUNITY to help us to get there. we need support, we need networks, we need friends, we need hope to keep going – we need to be seen, and *really* heard.

And I genuinely believe that this Labour Government can DO IT for us. A lot of people are merely existing in the shadows. When I go convassing, some people say they’re not listened too – but here I am. Here is Corbyn – with a really truly compassionate (& costed) manifesto that really, really looks and understands some of the issues and problems and solutions to a myraid of issues within contemporary society and in all of our lives.

As my friend said tonight, watching Manchester Live makes me wonder at what point our counter-terrorism strategy finally evolves to include a massive investment in culture and the arts…

The Hallam Difference is a domino affect. Every act of kindness, I try (though sometimes I’m accidentally a dick) to pay forward. Every little action is big when we come together. Keep pouring your beautiful minds and hearts into what is right.

This week is a good week to flaunt your awesome. To show the world we’re compassionate, that we believe in people and not corporations.

That we are the difference in the world.

I will be watching the election progress from Poland at night, and I’ll arrive back to England to Exit Poll news. Let’s hope it’s better than 2015 – though as Ed Miliband said to me on the phone yesterday, “It’s the hope that really crushes you”.

I can’t cry again about another General Election outcome.

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Small changes

Time slows when the lights are fluorescent and the days are punctuated by the rounds of the medical staff.

My head of studies for my PhD is a woman who is internationally known for her creative-design- person-centred approaches to dementia care. She’s an Occupational Therapist, with a background in art psychotherapy, and a PhD in using Art & Design methods in enhancing care in care-homes.

So I was super stoked when she asked me to be part of 1 of her many projects (some paid work on top of PhD). She invited me to be part of a project where we will design a Dementia friendly eye clinic. In real life.

Yesterday we had a meeting with some service users (I hate this term); a carer and his wife who has dementia. We spoke about all of their experiences of the eye clinic, from everything from leaving home and parking all the way through to leaving at the end.

There were many flaws in their care, some avoidable, some just a mistake, some just part of the design flaw within the pathway.

What I discovered when we looked back at our notes was that the things we could make better for people with dementia – would actually make these things better for EVERYONE who uses the service. How crazy is that?

I remember a few years ago, I had some crazy neurological stuff going on and it really effected my eye sight – I’d get like flashes of white light in my vision and I lost some of my peripheral vision. I had to see the eye doctor a bunch of times.

It was crazy just how unusual and difficult it was to go through that pathway. Eye drops that sort of itched, and we’d all sit staring at a wall, packed in like a crowded bus down a dim dirty coloured cream corridor. You couldn’t see anything clearly, but there was loads of small text leaflets teasing you to try and read them on the walls.  Your eyes hurt from the light. When it was time for anyone to call you, you’d get up and not be able to see who and where they were calling you from. Then the actual examination of the eye is uncomfortable – you have to lean onto some medical equipment – and being small, my feet didn’t touch the floor, there’s no arms on the chair & you’r completely unsteady – and my neck hurt from stretching it out across a small table to sit my chin in the face of the eye doctor.

It felt undignified, and intimate and vulnerable and stupid all at the same time.

Once they made me sign to consent to something I couldn’t even read because of the eye drops.

And then when it’s all over, you leave – by feeling the walls around you – and trying to remember which way was out. When you finally make it back outside – the light is bright. But in an unfamiliar way – and navigating the world through blurred vision enhances a crazy headache of sorts.

That was my experience as a young-un. Someone who has pretty decent eye sight (or did).

Now imagine that experience for someone who struggles to convey pain, or issues. Who is confused? Who has learning difficulties, short-term memory loss. Who can’t read?! 

I can’t imagine how disorientating and how scary and uneasy it must be.

I’ve been missing my clinical aspect of being a radiotherapist recently.

I think it’s the team work and the patients I miss the most. So I’m really looking forward to being part of a team, working with patients and their families, in a clinical setting again – but this time my main aim will be to come up with & test & prototype cool, person-centered creative & critical solutions — whilst at the same time learning some cool new researcher skills. Mostly how to get something you make, and apply it and embed it into the system. This is a skill I am really missing.

From just 1 meeting, I’ve already paralleled some similarities  of things that could change within radiotherapy and the dementia care pathway — there’s just such a long way to go. But, I’m excited!

We already have 4 areas of focus, and ideas to prototype. It’s too early to share or know if they’re any good or useful. But I can’t wait to share with you guys our future work on this!

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(In)Visibility and Art [& suffering]

Today, after 9-10 days of a horrific infection, I found myself feeling human enough to do some actual work. We’re organizing a conference about art and visibility, my PhD friends and I. More info coming soon! So I started writing the stuff we need to move forward today.

But what it made me think about was visibility within healthcare, and illness, and art.

I started thinking about Greenberg ( visibility of the aesthetics of experience), – and then about  the Cubists and other Post-Impressionists perspectives being  particularly poignant for illness and suffering.

But contemporarily, how  are we and can we understand someone else’s pain or convey our own to others? How do we make sense of the nonsensical, whether the chaos of life-as-lived or the inscrutability of dying? How do we answer the questions “Why me?” and “Why now?” when we are diagnosed with disease? How do we paint what we know is there but cannot see?  These are heavy questions which lie sullen at the bottom of every action within my PhD enquiry. Modern medicine, like much pre-Impressionistic art, tried to square this circle by instituting a technical and professional gaze that filters out the ephemera of the individual in order to identify and name what is hidden by opaque bodies (see, of course, Foucault 1994).

But this is not arts aim; it’s not a reductive attempt to discover the building blocks common to all landscapes or buildings or humans or musical instruments. It’s to uncover the essence of a thing, that particular thing, in order to reveal more.

Our representations of disease may actually conceal even as they seek to reveal. We know that socioeconomics and other social determinants (e.g., discrimination, exposure to violence, lack of education and social support, etc.) are tied to health and risk of illness and disease. We also know that socioeconomics and other social determinants affect prognosis and recovery. (Read Michael M’s The Health Gap for more of this)

Although the media love to highlight the enemy on our borders threatening to disrupt our safe worlds insulated from many of the realities of danger and suffering, it is actually our capacity for self-destruction that constitutes our greatest foe: poverty, poor nutrition, lack of access to care, neglect of mental illness, climate change, and war, both declared and undeclared. But far easier to wind up a distant epidemic and see a remote danger to ourselves (while thousands die in a distant place) than address our real threats. Despite many genuine humanitarian responses from wealthier “first-world” countries, it is still clear that we have primitive protective responses (at home and abroad) that largely ignore the real wolves at the door.

As the NHS looms on a crisis that was caused my a greedy, beaurocratic , irresponsible government, and Brexit heightens tensions, and Donald Trump’s inauguration starts to truly loom ahead, I got thinking.

Thinking about  all of this, I wonder if art is our tool to help both recognize suffering but also help build bridges with communities we have trouble connecting with due to these issues.  If the digital world fosters isolation, what evokes empathy? Which of our personas do we believe in—our social media portraits or our reflections in the mirror? What are the consequences of a digitally-created society in the psyche of the global community? Art *can* cross boundaries, social class, geolocked nations. It exists in between physical, real and the social-digital world.  It links us through history, makes the other seem friendly, it can hold up a mirror when everything else seems shattered and untrue. Art explores the complicated yet timeless questions of influence, superficiality, and powerlessness.

When I was first an art-student, I remember finding and learning all about this activist art history. From Ad Reinhardt creating “communist” comics under a false name and being investigated by the FBI, to more direct examples such as the Gorilla Girls, and PAD-D groups. They made work with a political edge.  It was so exciting! I wondered about how awesome it would have been, to be growing up in such a polarized and politically difficult time and then being involved in such grassroots political activity and art being the tool, or the process.  Almost a license to get it out there and be archived for the future. But that same political drive, was also given to the artworld too – Gregory Scholette of PAD-D continues writing about art and political activism with his artwork representing his ideals and holding the artworld accountable for its Dark Matter, Reinhardt wrote lots of essays – as published in “Art as Art” with his disgust of the commercialization of art.

Of course, now I found myself, in a much different world than 8 years ago where hope resided, and people were less obvious and less aggressive with their hate. Where politically, things all felt relatively stable and fine. I have since lost my political art naivety that I had then, and I don’t feel the same excitement as I did when I first found it —- but what does remain is my gut feeling that art CAN make a difference, and my passion in the use of criticality esp within a political art canon. Art can be urgent and important and poignant.

I wonder about all of these experiences, and lessons. And I think – yeah, it’s our turn to make the invisible – visible. We are traumatized witnesses, some of us accomplices, groping about in the gap between passive outrage and mobilized action. We are both: perpetrators and victims, objects and subjects endlessly exchanging roles.

It’s our turn to show that mirror to those who can’t see a reflection. It’s our turn to help people practice empathy, to feel less powerless, to make people accountable, to stand up for what is right – and I think it’s about time the artworld got out of it’s comfort zone.

I’m not sure what that looks like for me.  Some artists are already doing it. But our Art is about changing the world, rather than study how it is. It’s not just about making things, but making things happen. There is much proof out there that our common community has not been relinquished.

Is art sufficient to the task of unpacking these contradictions that lie within our society – or should it complicate matters further? Such questions are unanswerable, but we shall see and we shall do.

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Help Aleppo Smizz Print: Lets Be Kind Again

I’ve been watching the tragedy of Aleppo for months and months now. Slowly, and slowly getting more and more, and even more horrific. I never thought that in 2016 we would be looking at the world through fear like we are now – a world seemingly well connected, a whole history to show us how it will never pan-out well for either side. But here we are.

I read article after article about the genocide that is happening. And I feel incredibly powerless. I know we all have stuff going on in our lives – like trying to make one pay check make it to the end of the month, being sick or looking after a sick loved one, wondering if we’re going to have a job by the end of the year… etc. And these are no small-feats. But I sit and look around my room, at my mom and my dogs, I look at my Facebook messages with my bro, and i look at the christmas tree with it’s sparkling lights. I think how lucky we must be to not live in that kind of fear (or at least yet.. who knows what the future holds at the moment).

And I can’t just watch the world burn in horror without trying to do something. However my skillset is small. And my debts are massive. Since we raised around £1000 for Doncaster Detection Trust this year, I figured maybe another drawing could do the trick to help raise the money and the funding to get the help that the people of Aleppo so desperately need.

So here’s my first print. They are all limited edition of 100, signed.

A4 in size, printed in matt. On heavy 220gm paper.

They will be posted to you after christmas.

Starting donation at just £5. All money I will split equally between The White Helmets and Doctors Without Borders/MSF 

Make the £5 (or more) donation to Paypal. PLEASE ADD £1.50 to cover postage too – unless your donation is over £15. I will cover the postage costs for you for your IMMENSE generosity.

DONATION HERE:

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=SWMGL3DWTSVPQ

Email me if you have any issues or questions! smizz@sarahsmizz.com

Thank you for taking the time to look, and even more MASSIVE thanks to everyone who has already donated to get this print.

Lets Be Kind Again (we can be the change!)

(More prints coming soon too)

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Love Is Love Is Love: Working To Make Things Better

Around 5 years ago, my life changed in a fatal kind of way. When I was in America, I was given a diagnosis that made feel like I was looking down a barrel of a gun and made me question everything in my life. This crazy plot twist, that wouldn’t have been out of place in a Tramedy, set off a bunch of things in my life. The past 4-ish years have been personally-health-awful, but yet through this difficult time this happened:

Last night I picked up my crazy amazing big prestigious award from the Houses of Commons, like some kind of rock-star. It was surreal, and I’ll probably never get another opportunity to experience something like it. But it was such an incredible evening and I met so many amazing, talented, smart, giving and generous people who work within healthcare,  specifically within radiography and oncology care. We should be so proud to have these people – and people not acknowledged working day in and out within the NHS just like them – and in our country.

It’s more than anyone could ask for and it’s an absolute rare privilege; To be recognized for trying your best to help others. I’ve never really been acknowledged before,  but I can’t help but feel heavy with gratitude to everyone who got me here, as thanked previously in many, many blog posts previously. Because this award is just representative of everyone who got me here.  There is no greater gift than being able to be part of something bigger than yourself, trying to make things better for others. And so the honour of being part of narrative alone is incredible.

Then I got home, back to the north, anxious about the U.S.A. Elections, fell asleep and awoke to Trump president-elect.

When I fell sick, I had so much angst because I felt like there was so much left to do and so much more love to give in life. I’d cry because I felt sorry for myself. And I felt ashamed even more for behaving that way, for being weak. But then on reflection I realized that the tears  flowed because they needed to. Because things were building up instead of me like a pressure cooker, and I wanted to keep moving forward.

I was crying because I wanted to live, because I was afraid of not being here.  And I was afraid of being forgotten.

So having gone through that, and 2015 UK General Election and Brexist Ref vote – I figured we need a hope-of sorts – a plan of sorts. Here’s what I’ve learnt from my few years living invisibly and wanting so bad to enjoy life again. And how Brexit, and Trump and a million refugees stuck around the world make you feel powerless and everything is lost. But

Trust me when I say this time is short & this life is both terrible & beautiful.

Resentment & anger are inevitable & sometimes are important, temporarily,  but it’s important to not take up residence in that place. I PROMISE you deserve better. Even if you voted Trump. You do deserve better.

I promise you there are people who will leave you in life, but that others will embrace you unconditionally in your brokenness.

So you go out & run fearlessly in the direction of love. You are never alone. Your tribe is out there. GO GET IT. And please keep laughing. Joy is salvation. In the darkest, lowest moments, being able to find something, anything to laugh about can save you.

We never stop. We never give up. We fight for each other and protect each other.

Living and giving kindness is the best revenge. 

The most creative challenge of our lives is learning how to approach our own inner darkness with curiosity, empathy, and friendliness.

And that’s where it’s all going to come together.

Sometimes in life, if you are very lucky, you find the grace in having it all blow up in your face.

Our jobs for the day (life): Tell the truth; Be kind & curious; Love all people with all your heart; Don’t put up with any bullshit. 

Love Is Love Is Love, we’ve had a bunch of set-back but that just means we’ve got a lot of work ahead of us but lets keep working to make things better – for ourselves and for those who are voiceless, victimised, invisible or who can’t say it for themselves. There is so much more that what unites us than what divides us.

Our work isn’t done, and we need each other and others less fortunate than us, who are REALLY struggling need us. So don’t wait to be called, because you’re already being beckoned.

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Taming the beast in a complex system

Last week I had my first medium-plus allergic reaction to Shellfish (I think). I didn’t even eat it, I just ate rice that had been cooked with it. The kicker is, I don’t even LIKE Shellfish.

Literally within an hour my face swelled up (not like Hitch style but pretty bad never the less) & my throat became ridiculously itchy & sore, and I became wheezy like when you have an asthma attack. Needless to say, i wasn’t best impressed with this new hyper-sensitive immune system of mine. I hadn’t been to see a doctor in literally months, and i was hoping to keep it that way. Damn.

I had to go to the urgent care center, where I was given steroids, more anti-histamines, and a GP appointment. My GP prescribed me my first EpiPen, and a referral to an immunologist.

Today I picked up my EpiPen. I’ve never seen one up close before.

My GP gave me strict instructions about how to use it, & that I can see the practice nurse to show me how, and that I should call an ambulance if i use it & that I’ll always have to carry it and anti-histamines with me for the rest of my life now “just incase”.

But what struck me was the design of it.

It’s really quite big! And I wonder how smaller people (kids etc) carry their EpiPens about if they don’t bring a backpack? Its design is a bit impractical. They’re reliable, sure. They’ll buy a patient who’s in the midst of a severe allergic reaction a few crucial minutes to make their way to the hospital.

But they’re also bulky. Their epinephrine solution isn’t particularly shelf-stable, and will easily degrade in temperatures that are too low or too high (too cold in a bag in the winter? too hot in a jeans pocket perhaps?) and its expiry date on mine is in about a years time. So not very long.

I had a quick google to see if there was other designs available. In America, there was 100s of news articles on the esculating price tag: apparently a pack of two EpiPens now lists for $608 in the USA. (I checked the cost for the NHS & it’s £23.99 for 1 single dose).

This revealed that there’s a design patent on it until 2025. One company owns the monopoly of the EpiPen. & because of this, the design flaws of it for the user, are the profit for company. If it’s too big to carry, you’re more likely to buy more (in the US anyways) to store in other places or for back-ups.

Accidental injections seem pretty common, and instructions are relatively simple, but, adrenaline is invariably used in highly stressful situations, in order to treat a severe allergic reaction. As the auto-injector was originally designed for use in the military, the users were well trained to manage in these circumstances and the user group generally consisted of healthy adult males. Nowadays the devices are given to people of all ages, and with children suffering more from anaphylaxis than any other age group, the device has to be appropriate for a wide range of user groups.

On the recent BBC Radio 4 programme Dr Boyle highlighted how having to respond to a stressful situation can affect the person administering the drug. In his trial, more than half of the intensively trained parents were unable to correctly operate the devices in an emergency.

He cited some of the common errors associated with auto-injectors: holding them the wrong way round, failing to remove the safety cap and not pressing hard enough. They also discussed how little research into the efficacy of the device has been done because studies can cause severe allergic reactions in test subjects, plus real life situations are likely to occur in public and not in clinical settings. All of these issues have resulted in little drive to improve the devices over the last 50 years, leaving key issues unaddressed. (1)

The very fact that the EpiPen has been dominant for so long makes it hard for challengers to come in with a radically different design.

So, what does all of this mean? Well… there’s a HUGE Challenge for someone to make a MASSIVE difference to 1,000’s & 1,000’s of people, but also challenging in being able to design everything that is needed into an EpiPen (engineering, plastics, drugs, function, deisgn, safety etc) that’s life-style-functional & more cost effective long-term (shelf-life etc).

It highlights that instead of trying to carve out a focused segment of healthcare or a specific specialty of design, we should be re-framing these conversations about healthcare improvement around a set of challenges.

No one person or one organization can take on the whole system, but collectively we can make significant, people-centered change happen. I wrote on my blog last night about ‘critical making‘ – If there is one element that is sorely lacking in healthcare, it’s the ability to prototype, to critically make.

It can seem like a beast of a system can healthcare: its big, complex, and delivering on one of the most complex industries. But I’m trying to keep practicing at staying awake and trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

 

Who knew some Shellfish and an EpiPen  experience would be showing me and putting into practice that listening can tell you who you are. That paying attention can give us the change and the meaning that we so badly seek.

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(1) BBC Radio 4, Inside Health, Wed 7 October 2015http://www.bbc.co.uk/programmes/b06flmg7

other readings:
Adrenaline auto-injector advice for patients, UK Gov.ukhttps://www.gov.uk/…/adrenaline-auto-injector-advice-for-pa…

Adrenaline auto-injectors, European Medicines Agencyhttp://www.ema.europa.eu/ema/index.jsp…

How Mylan tried to keep Teva from selling a generic EpiPenhttps://www.statnews.com/…/2016/08/31/mylan-teva-generic-e…/

 

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Every transformation that we are witness to changes the world, & this in turn, changes us: 3.5 weeks of lessons in PhD-kingdom

It’s only been basically 3.5 weeks of being an enrolled PhD student. And what is it teaching me?

Well, I’m being schooled,  once again.

I keep being met with questions of what I’ve done – and I try to justify my lack of products with: “I’ve been doing it for 3 weeks?”… but people want something more concrete, I guess.

At first people  told me I should be reading, and reading lots! Getting together my bibliography. That’s what I should be doing for the first weeks they said. So my first week, I diligently sat in the library and looked up interesting books and downloaded paper after paper from the library gateway on creative methodologies and healthcarec(& spent a hefty time on twitter). Then the second week rolled around,  really quickly I might just add, & other people started saying that I really should focus on the making art bit because, you know, it is a practice led PhD after all and I don’t want to get to christmas and have nothing to show for it. Too right. So I started making some really terrible pieces of parts of work/thinking process (you know, it always starts off that way, so not too worried at this stage). Then week 3 was met with that I *really* should be focusing pretty much on the REF1. which has to be submitted in literally 6 weeks now. Scary AF.

So I’ve sat and stared at my REF1 form on word for about a week now, feeling the pure weight of re-framing, of patching up the holes of my research proposal, maybe even changing it slightly, of finding out an extensive and integral and good literature list.  Of finding artists to reference and draw from, of figuring out where I sit – art? design? healthcare? sociology? anthropology? (it’s obviously all of those things, but hot damn) —  trying to get my head around my potential methodologies and the pitfalls that they entail, and figuring out how long everything *should* take me to create a plan of sorts, and lets not even talk about my issues of ethics – and my potential plans in place whilst I endure a long ethics procedure — all of this needs to fit into 1000 words. No joke. And I have insane imposter syndrome that it’s not even funny.

My head of studies told me I needed to take a few weeks to just play, to knock down these boundaries I’ve learnt/built up during the past few years. To reflect upon all of the things I’ve experienced, and frame them. To see the tensions that lie within the frameworks of healthcare methodologies and artistic/creative methodologies – how these paradigms work. How they oppress and close discussion or the opposite or even offer more opportunity.  I wrote quite a few reflections, maybe I’ll share some on here in due time.

I applied with a proposal for my first symposium talk in London(combining art and healthcare together – more info soon) and got it, showed folks how to use drawing as a research and reflective tool at the IPE conference at SHU, and I’ve got the radiotherapy annual conference in Jan to present my other design research from earlier this year. All of which I’ve started to pull together over the past 3 weeks too.

I’ve drank a lot of tea, I’ve sat and stared at the walls in my studio. I’ve moved into my city center apartment/flat.

But mostly what all of this has taught me is that when the ground shifts, the next chapter begins. Here’s what I’ve been thinking and learning and trying to tell people when they’re super confused about why I’m using artistic practice-led work to create healthcare change.

Making things can expand one’s understanding of what it means to be human. Finding the vehicles for exploring the edges of your experiences can be really, really scary but it’s a great way of transforming thinking into practice. Change is inevitable, adaptation is optional.

Every transformation that we are witness to changes the world, and in turn, changes us.

‘Making’ is a process. In comes from ‘doing’. Doing something. ‘Making’ can bring you face to face with your own agency. ‘Making’ has some of the qualities of an echo. It can travel in space and time and come back to you in the form of a feedback loop.   It helps to make something that you don’t necessarily understand. And even if you think you understand what you are making, the act of making it will change your understanding of it and you will feel yourself get bigger.

I have been exploring my own tracings, teachings, drawings, wanderings and wonderings, feelings, thinkings, questionings and assumptions ever since to better see what can happen when something opens and something else falls… out. And like all ‘critical making,’ it attempts to create a context to make tangible some of the possibilities that can drive passion and engage spirit by striving to go beyond the things we know and towards our own reckoning.

‘Critical making’ can remind us that even when we act alone—as an artist, as a designer, as a healthcare professional, or as a hermit—in isolation, we are part of a larger community.

Seeing is a reflexive process, and like an echo it can find its way back to you. Of course, it all depends upon listening. Everything depends on listening. Listening is different from hearing. Hearing can tell you which way to go. Listening can tell you who you are.

I’m having to re-learn to be diligent, and teaching myself to be better with my time, and my work. I’m practicing at staying awake and  trying to be attentive to what is elusive, fantastic, contingent, different and barely there.

I said that i was going to take every single opportunity I get as a PhD student. And I’ve attended nearly 75% of everything open to me, talk wise within my free time.

I plan on paying attention to everything. And remembering what Linda Sikora said when I feel crazily over-whelmed with all of the above.

She says that, “It’s more important to keep paying attention and to follow your attention wherever it goes, than it is to think about meaning and content, because meaning and content come from paying attention to the world.”

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